The Gilenya Experience

I felt like I hadn't been doing everything in my power to control this disease. Yes, I was eating healthy. Yes, I had gone for the CCSVI procedure. Yes, I was seeing a naturopath and taking dozens of vitamin and supplements daily. I had seen some benefits initially after CCSVI but when I started to see symptoms reappearing after a few months, I started to panic. All I could think of was that my doctors were right all along. I was crazy for refusing all MS drugs. After my rant in the fall about risk vs. benefit with all MS drugs, I felt a little stupid for even reconsidering. These drugs are very harsh on the body and come with multiple side effects. I myself have had anaphylactic reactions, swollen lymph nodes, and constant UTIs while taking certain ones. But once my symptoms started coming around again and the disease was once again becoming loud and unpredictable, I found that I was second guessing my decision to turn my back on western medicine so soon. I felt at the time that natural medicine was something I had to try and if it worked, it worked. Many people have claimed that MS progression can be halted or ever reversed with a strict diet and specific vitamins/herbs and naturopathic medicine has worked for many different kinds of conditions, so of course it's something I had to try. I'll forever continue to eat as well as I can and of course take any vitamins, minerals, herbs or supplements that may work in my favor, but right now I've made the decision to not give up on my neurologist as long as she thinks she still has something to offer me. And her suggestion was the first-ever oral pill, MS drug called Gilenya. 

I am my neurologists first patient on Gilenya, meaning I'm also the first Manitoban on the drug. After I told her that I'd be willing to give it a try, she literally had to put things in place just to get me started. In order to get approved for the drug, I had to go through a handful of appointments. First, and just like any of the other drugs I've taken, there's the seemingly litres of blood that I have to hand over for testing. Liver enzymes and function is a concern and will be monitored throughout the use of this drug. I have to see an optometrist that has been hand-selected by my neurologist who has been familiarized with the drug and the potential that I can developing macula edema while on it. There's a 0.4% chance I will develop this in the first 3 months, however it may also be able to be reversed it caught early enough. There have been reports of hair loss, acne and weight gain (ugh!!). There are also more significant life-threatening problems that could result from getting cold sores while on the drug (don't get 'em) or from catching chicken pox (had 'em when I was younger). I will have to have an EKG to ensure I have no arrhythmia or other heart problems. Now the best part, I will have to take the first dose at the hospital and remain there for 8 hours afterwards because there is a potential that my heart rate will drop so significantly that I'll need medical assistance. I'll be continuously monitored (mind you, by nurses who've never dealt with the situation or the drug before) and if my heart rate starts to drop to below 55 beats per minute, I'll be instructed to run in place to keep it up. Now I don't know if it's just me, but any drug that can inadvertently have that sort of effect on a persons heart is reason to be freaked out!

My bloodwork and other required testing happened very quickly and results came back with no concerns. The only thing left to do was to book my initial dose appointment.

I went for that appointment at 8am on Jan 27th at the Health Science Center and I was absolutely terrified. I guess I'll mention it now that 11 people have died from this initial dose and the 48 hours that follow it. It's a known fact that the drug will slow down a persons heart rate, but after 48 hours it should return to normal pace. I believe the deaths have happened during trials and since, in the 48 hours after initial dose. The heart will just stop. So needless to say why I was all but sh!%ting my pants that morning! Once again, Sheldon held it together for the both of us. (God love 'em - what would I do without him?!) Once I got to the hospital, they set me up in a semi-private room with a bed. The nurse came in and took my initial vitals then passed me a little white & yellow pill and nonchalantly gave me some water. She clearly wasn't briefed that I could DIE today! I don't know what I expected, but I put on a brave face (since I clearly forgot to put on my big girl panties that morning), gave Sheldon a 'look' and tossed it back. Bottoms up!

This is a picture of us in the hospital room right after I took the pill.

The nurse then left the room, saying she'd be back every hour to check on me. Sheldon and I just sat looking at each other, almost waiting for something to happen. It never did. Eight hour came and went, I read Ellen DeGeneres' new book cover to cover and my heart rate didn't go below 56. Then we were sent home. The next day I had some chest pain, that looking back was probably due to the stress of the situation.  I went to the ER that night just as a precaution and my vitals and EKG were all fine so they sent me home. I couldn't help but be worried and didn't want to be too cautious considering the circumstances.  Any time I've had any chest pains since starting this pill, I've gone to the ER, only to be sent home after a perfect looking EKG. It still worries me but I've relaxed a lot compared to the beginning weeks. It's now been over three months that I've been on Gilenya, and I've only really experienced a bit of weight gain (which is annoying but on the minor side in the big picture). I'm now due for my 3 month bloodwork and optometrist appointment this week. I don't want to jinx anything but I've been feeling alright lately. I'm still not able to forget that I have MS as it pokes its ugly head out many-a-days, but I haven't had any huge setbacks since January 27th. I'll take it.  For now I continue to be optimistic about this drug I almost never started to begin with.

H. xo